Hi. So I saw Dr Lachmann this week and he announces that my MRI shows a growing lesion on my brain, and that this means I may start getting ALD on top of my AMN. The only way to stop this is to do a bone marrow transplant, which is very very scary.
Anyone has experience of this situation? And has anyone actually had a bone marrow transplant?
Hi Nicholas
Very sorry to hear your news. Dr Lachmann has probably explained about bone marrow transplants so I won't repeat that here. You are young so that should work in your favour.
Maybe the best place to start is with Max (Allder on this forum). He is like you and is going down this route. He says that his hospital in Sweden is confident of a successful outcome. Start by reading the correspondence here that came from this post.
Mark (Bozzer on this forum) has also done quite a lot of investigation about this and is in contact with medical people in Paris.
Whatever you do make sure you push the doctors to liaise with other places where they may have had success with this.
Keep us all posted. And very best wishes from all of us.
Chris
Thank you so much Chris for your advice.
Is this progression or regression?
4-aminopyridine-3-methanol (4-AP-3-MeOH). 
Nortriptyline capsules
New Here. Elevated VLCFA, Possible AMN. California Surfer:)
electric shock sensation in legs!
